While nobody said it was easy...no one ever said it would be this hard (The Scientist, Coldplay).........Sophie becomes so agitated now that we have found one of the only things to soothe her is Coldplay's song, The Scientist. She is so quirky....screaming one minute, red in the face, madder than hell...then she hears the opening chorus, takes a deep breath, and calms down. I need to write the band a letter to let them know how often this song has saved us!
This latest posting is being written with a lot of conflicting emotions and thoughts. The vicious cycle that is infiltrating our lives has begun again....now that Sophie has been pumped full of fluids she is feeling better, engaging more, happier, and able to do more things. Dehydration's effects long gone, the team that makes up Sophie's doctors are now very split as to the next step. Of course to several of them she could "turn the corner at any minute". We, as her family, realize however that should we get out of here with nothing new in place, she will continue to eat her 1.5-2 ounces per feed (10-16 ounces in 24 hours) and slowly become dehydrated again. While I know there is nothing I can do about it now, I wonder, if the doctor's had listened to us in February, how much easier things would now be.
We are currently awaiting a CARE conference where all doctors/therapists who have had a hand in Sophie's care will meet to discuss the next step. While we are a little surprised that it won't happen until probably Thursday, we are thankful that we will both be a part of that meeting. The conflict, I believe, is stemming from the huge decision we will have to make. The current recommendation from the geneticist, neurologist, and speech therapist is to put a G tube in. The GI and Hospitalist doctors are still on the fence because Sophie is staying on "her curve" (can I say I hate that phrase) and has gained a little weight while here (mostly because of the IV fluids they pumped into her for almost 48 hours).
I feel like this is the biggest decision we have ever had to make and it petrifies me. I know that we all continue to pray that Sophie will turn the corner...any feed that she has that is "good" makes us think that she is moving beyond this 1-2 ounce garbage....however, good feeds are few and far between. To have medical professionals split is even more nerve wracking.....we certainly want to make the best decision and not rush into anything too hastily....have we waited long enough, given her enough time, done all that we can do to make this better? I would like to think so, but the thought of this G tube going in has me questioning everything.
The speech therapist said today that should a G tube be placed we will feel like we are performing a medical procedure every time we feed her at first. She said we will then get to the point where Sophie will be happy and less stressed ultimately leaving us less stressed as well. She will want to cuddle again...something that has changed in the last month as she becomes less engaged with us during feeding and most other times as well. I will never be able to describe how painful that alone is for us as her parents.
We continue to pray for guidance, patience, and wisdom.....
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